I wanted to share a bit of my experience.

Around two years ago, I went through a major health situation that completely changed my life. Losing my stomach wasn’t just a physical change — it affected how I saw myself, my energy, and my daily life.

For a long time, I felt lost and disconnected from who I used to be. The hardest part wasn’t only the recovery, but learning how to live again in a different way.

Over time, things slowly improved. Not perfectly, but step by step. I started understanding myself better and finding a new way forward.

I’m sharing this here because I know how important it is to connect with people who understand what this feels like. I’m Polish, and for the last 10 years I’ve been based in Barcelona, Spain.

At some point, I ended up writing a book about this experience because it changed me so much, and I hope it can help anyone who might be going through something similar.

Thank you for reading.

Greg

I used to be part of a support group back in 2008 when my dad was diagnosed…it was called the EC cafe

Mark Wolgram started it it took it over

He was an inspiration and so helpful after he passed I believe his wife took it over for a while

I am wondering if this is the same site?

I have been living with the somewhat random triggering of excess bile and the acid burning pain, now for almost 12 years ago. And I'm still looking for a reliable solution to relieving the bile acid burning pain when it inevitably occurs.

Over the years I have identified some of the triggers that affect me: drinking to much carbonated liquid or even water, to much coffee or chocolate (these I can have in limited amounts without problems), to much fatty food at once (fat triggers the bile release), for me even anxiety seems to trigger bile release and can occur at any time.

Some solutions that I have found that help relieve the pain are:

1. very small amounts of ginger ale helps alleviate the pain, but there is a fine line between enough and to much. The ginger must do something to relax the gut, because ginger candy was also something that was recommended during chemo treatment.
2. deep breathing (seems to work well for mild pain relieve)
3. if it is a large amount of bile in the gut and very serious pain then sometimes the only effective solution for me is to vomit the bile out of your gut.
4. I've also tried (on and off) sucralfate and a bile sequestration powder, GI recommended as a possible preventative solution, but these don’t help immediate pain relief when bile is triggered, only a possible preventative measure.

If anyone is having similar problems and has found other reliable solutions to neutralize the bile in the gut when this occurs, please help with this ongoing and what will be for me a lifelong continuing issue.

Has anyone had any expeience with revision surgery after your TG. My fiance had TG (Bilroth2 Braun procedure) and because a severe case of acid/bile reflux, we have been advised to perform a second (revision) surgery to Roux en Y.

Thank You.

I am new to this site. This has been a crazy time for me because I am a 30-year cancer survivor. The radiation treatment that I have received during my treatment is kicking my butt. Six months after receiving radiation treatment, My small intestants became fused together. surgery was performed. Since then, I have been living a life centered around my bathroom visits. Recently, a CT scan so

showed a cyst on the pole of my left kidney, a mass in my stomach, and a lesion on my liver. One GI doctor looked at one of my CT scans and announced to me that I have liver cancer. After that he refused to see me anymore. Now I am setting up appointments for treatment at another establishment. Before moving on to another Hospital, I was sent from department to department with very little results. This is when I became my own advocate. I have never been in the position where I had to read my own CT scans and ask for help from a qualifying doctor. To my surprise, I had a double hernia that no one was telling me about. I never knew how dangerous a hernia is until I read up on them. My question is why is my care team ignoring and down playing hernias? The moment I had the two removed, 85% of my pain, and symthoms went away. Another hernia showed up recently and the pain returned with a bladder infection, and inflammation along my descending colon. How cold a GI doctor ignore a hernia? Why ignore something that causes infections and pain? Get this I mentioned to my new GI doctor that the one or both umblical hernias are back. To my surprise she did not see this as a big deal. Well she is not in pain from hernias I am and I have scheduled an appointment with another GI doctor.

Since COVID I find myself with constipation more frequently even though I don't eat a lot of food. I eat smaller meals and try to eat every two hours however the constipation tend to prevent my food intake. Any suggestion or recommendation?

My dad was diagnosed with stage 4 gastric cancer in October 2023. It was very traumatizing at first has we were told he would have 6months to a year. It took a huge toll on us, specially me as he was estranged to me. Long story short we’ve gotten closer & I help him as much as I can.

It bas been a year & 3 months since his diagnosis & he’s doing generally good & on palliative treatment. His cancer is stable as the onco calls it and he’s living a pretty decent life. He still is able to care for himself in all aspects, but I know with cancer things can change at any given moment.

I have a big bday coming up and have been planning to go on vacation with my husband for 2 weeks in the summer time. Is it bad if I do? Im so uncertain of what is right or wrong at this point. I have an older brother & he can lookout for him but my fear is what if I book now and by the time summer comes things take a turn for the worse.

Any advice would really appreciate it.

Lost in Dad’s cancer battle

I think the best that I can contribute is to tell my battle with Stomach Cancer and let you pick what information is helpful to you. My wife was a great help to me during my battle with Stomach Cancer is the first thing I can share.

Dr Google and the internet are not to be viewed as superior to your Oncologist.

I was diagnosed with Stage 3B Stomach Cancer in July of 2019 with a 2" x 1 1/4" fully adhered tumor in my stomach. At the time I was living in the Phoenix valley and went to an oncologist. I was an active healthy 70 year old who had good health otherwise and recent anemia leading to shortness of breath was the only thing that allowed me to discover this cancer.

My Oncologist had further diagnostic detail done and I was told that my treatment would be in 3 stages.

About two weeks ago I was diagnosed with stomach cancer. I've had acid reflux since the late 1990's and have been on Omeprazole since. As long as I took it no problems. My father and grandfather both died of colon cancer. My father preached me to look everytime I went to the bathroom looking for blood. Which is my habit. Back in June of 2018 I noticed that I was having black stools. I decided not to freak out and wait and see what the next ones were like but I got sick to my stomach and had diarhhea so I didn't bother checking. I went to the hospital and they said not once but twice that I was just dehydrated. I finally went to another hospital and was told my hemoglobin was down to 6. I got two units of blood, 3 units of potassium, and some magnesium. They did an endoscopy and found a large ulcer in the fundus part of my stomach. I was released after 5 days. I finally was able to get another endoscopy on Sept. 6, 2018. The doctor told me the ulcer looked like it had never really healed at all and that he did a biopsy. On Sept 10 the report came back positive for adenocarcinoma. I was sent to a surgeon who was talking about removing my stomach. But he said he wanted me to see the Oncologist first and what she decided would be the course of action to be taken. After 2 CT scans and a PET Scan They found 4 tumors in my stomach, one tumor on the ligament that holds the stomach in place, and the pet scan showed a spot in a liver lobe. But the lungs were clear and bones and lymph nodes were clear. The Oncologist said they weren't operating because it has already spread too far. She said it is incurable but with chemo they hope to manage it, keep it in check, or shrink it. 

On Sept 25th I got my first chemo treatment. They're using Oaxliplatin and 5FU. I got the Oaxliplatin in the office and they sent me home on a 46 hour pump of 5FU. I'm not shocked that I have cancer because of the family history but I am surprised that my age is only 55. I'm nervous and scared of course. I'm not looking forward to the possible side effects that are supposed to hit next week. I already have trouble swallowing small food that will get caught in the upper part of my esophagus. It makes eating difficult trying to decide what I can eat that won't get stuck. That has been happening for a couple months now. My GF has been a rock in this beside me. She has been trying to be as positive as possible. I have my moments that are hard and break down. I have two little granddaughters because of my GF's daughter that I adore. They're almost 3 and almost 2. It breaks my heart that if and when the cancer wins they will eventually forget Pop Pop Mark.

There is one thing they're trying to do. Since my Grandfather and Father died of colon cancer they want to test me for a gene called Lynch Syndrome. If I have the Lynch Syndrome then they will stop chemo treatments and focus on using some protein that has had good results fighting cancer. I just have to get it pre authorized by the insurance company which I'm in the process of now. If I don't have the Lynch Syndrome then they will add another medicine to my 2 medicine cocktail that I'm currently getting. I'm hoping that I have the Lynch Syndrome right now.

Thanks for reading and listening!

Shades 

However, her endoscopy results were already suspicious of cancer back in July (3 months ago!). We are very concerned because it has been over 3 months without any treatment. Her first chemo is scheduled in 2 weeks, but knowing the aggressive nature of signet ring cell, I am so worried that it might keep spreading. If I had control over the schedule, I would start chemo this week.

Any info/shared experiences with Signet Ring Cell Cancer would be greatly appreciated. Thank you!

Hello everyone,

I'm wondering if anyone has experience with pregnancy after a total gastroscopy. We are planning to conceive soon. I would love to hear your experiences and the challenges you had during pregnancy, and what to expect, what to prepare for. Any advice would be very helpful.Thank you all very much.

My husband was diagnosed with stomach cancer on July 10th. This diagnosis started with back pain in early June which progressively got worse over 12 days, when he went to the doctor the pain was initially diagnosed as kidney stones and he was to await a CT scan. The next day 6/16 he was in such extreme pain he could not walk and we went to the emergency room. The ER thought there was a blockage to the bladder so they installed a catheter. The catheter did not help and we returned to the ER the following day. At this point the kidneys were on the brink of failing and he was admitted to the hospital for 3 days, had emergency surgery to install nephrostomy tubes and bags and ultimately not find the blockage in any CT scans.

At the end of the next week (6/30) his primary care doctor informed us a mass in the stomach was noticed on the most recent CT scan. An upper endoscopy was conducted on 7/5 for a biopsy and we received the biopsy results on 7/10 that the tumor is cancer. On 7/20 we met with the oncologist and they informed us the cancer is stage 4 based on the impact to the ureters and the kidneys/bladder. The oncologist said the cancer was incurable because it has spread to the peritoneal, the plan was chemo to extend as much time as possible and he has 1-2 years of life at most.

This was the worst news we could possibly have received. We got married in October 2022, he moved here from Australia in September 2022 and I am pregnant with our first child.

We received 2 additional opinions from City of Hope and UCSD and had better outlooks based on the PET scan not showing spreading to other organs. However our insurance is not accepted by either of those providers until I have the opportunity to change insurance during open enrollment

The port was installed today 8/15 and chemo was scheduled to start 8/17 however we found out the oncologist delayed starting chemo to 8/31 instead so it’s 2 weeks after the port installation. Therefore we would not have chemo started for almost 2 months after the diagnosis for an advanced and aggressive cancer. We are feeling very hopeless after this news, my husband feels like the oncologist is not communicating with us and is not invested in finding a cure because of the stage 4 diagnosis

Is this normal for the chemo to wait longer after the port? Also has anyone had a similar diagnosis? We are looking for any hope and intend to fight this!

Thank you for reading this long post,

Brooke

My fiance had a total gastrectomy, almost 3 years ago. She was diagnosed with sotmach cancer at the age of 25. One thing that continues to be an issue is the esophagus irritation (Esophagitis). We have consulted several doctors. Some say to focus on food and life style, others indicate that is is a mechanical problem (eophagus and small intestine connection point) and that some people just have more trouble addopting after surgery.

If anyone had similar experience, or knows anyone with simillar problem please share it if You can. We are looking for some advice, from someon who knows what she is confonted with.

Thank You everyone.

Four year survivor to Stage 3 Stomach Cancer. Chemo - Gastrectomy - more Chemo. Roux-In-Y reconnection. Currently two gall stones show on scans.

About once every ten days at night I will get a very painful bile reflux attack as though I am being burned with terrible acid. I eat about four tums and it slowly reduces the pain.

Any good preventions or better treatments than calcium?

if anyone has any suggestions or would be willing to talk to him, we would be extremely grateful ( all of us are located in San Jose area)

thank you!

my friend was just diagnosed with Lanitis plastica , given the option to remove stomach or start chemo

looking for info from other folks that have had this situation